ASAN expresses concern regarding new HHS report on autism research

photo of a compass next to a graph


ASAN expresses concern regarding new HHS report on autism research

New report uses “creative accounting” to reflect increase in services-research; confirms persistent under-representation of adult needs

Washington, DC – July, 10th, 2012 – This morning, the Office of Autism Research Coordination (OARC) within the federal Department of Health and Human Services (HHS) released a new report analyzing the allocation of autism research funds in the public and private sector. The Autistic Self Advocacy Network, the leading national advocacy organization run by and for adults on the autism spectrum, issued a statement expressing concern regarding the low percentage of funds allocated to the needs of adults and a change in reporting methodology utilized to report a dramatic growth in the percentage of funding reported to service-provision research, despite a lack of comparable real funding increases in this area.

“This report confirms that the national autism research agenda is dangerously out of step with the priorities of Autistic people and our families,” said Ari Ne’eman, President of the Autistic Self Advocacy Network and outgoing member of the Inter-Agency Autism Coordinating Committee (IACC), “Furthermore, the report’s increase from 3% to 16% in the percentage of funding allocated to services-research is almost entirely attributable to OARC’s choice to count pre-existing funding streams around practitioner training as research. This kind of creative accounting presents the impression of research progress where little exists.”

The new report – the 2010 IACC ASD Research Portfolio Analysis – found $408 million was spent across 1,367 autism research projects in 2010. Of that, only 2% went to research into the needs of adults. While OARC reported that 16% of the research agenda funded projects relating to the service provision needs of children and adults on the autism spectrum, 74% of OARC’s reported services-funding could be attributed to pre-existing practitioner training programs. These programs, such as the Health Resources Services Administration’s (HRSA) Leadership Education in Neurodevelopmental Disorders (LEND) are long-standing and have never before been considered research. In 2009, OARC reported only 3% of the research agenda going into services and less than 1% going towards the needs of adults.

“It is concerning that the research funding community persists in paying so little attention to the developmental period those of us on the autism spectrum will spend the majority of our lives in,” said ASAN Board Vice Chair and incoming IACC member Scott Robertson, “As a new member of the IACC, I intend to work to raise the profile of Autistic adult and service-provision related priorities. The Autistic community deserves real change.”

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, quality of life oriented research, and the development of Autistic cultural activities.

Media Contact:
Melody Latimer
Director of Community Engagement
Autistic Self Advocacy Network